What Does It Feel Like to Live with Psoriasis?

Medically reviewed by Debra Sullivan, PhD, MSN, CNE, COI on July 25, 2016Written by Marjorie Chance on July 25, 2016
Living with Psoriasis: Marjorie’s Story

The onset

Psoriasis has always been part of my life. I was born in 1942, during World War II, with infantile psoriasis or infantile eczema — the doctors weren’t sure. At the time, treatment probably would have been the same. This was before the introduction of topical corticosteroids. Coal tar preparations were the normal treatment for psoriasis, although it’s still not known why these substances work.

I was given frequent baths with tar soaps, special ointments, and plenty of moisturizer. I was lucky that my mom was a pharmacist. If something new came along in the medical literature, she made sure that I would have it.

Usually when psoriasis afflicts children, there’s a family history of it. In our case, my mom’s father had it. All I knew as a young child was that I had the same thing my beloved grandfather had. We both used Cuticura soap.

Infantile psoriasis is relatively rare. Psoriasis occurs in children under 10 in about 15 percent of people with psoriasis. It generally begins between ages 15 and 35. If your psoriasis starts as an infant, it’s generally thought that it will be mild and sporadic later in life. Fortunately, I fit this pattern.

As a child

My earliest memories of my psoriasis are from about 5 years old. I vaguely recall holding my arm under a special lamp. It was probably a form of UVB therapy. I remember the patch of rash in the crook of my elbow more clearly. It was covered with a gauze pad and strips of adhesive tape.

It was itchy, and I wasn’t supposed to scratch it. I didn’t think about it much, except that I shouldn’t mess with it. There’s a photo of me and a friend standing on top of a grand piano in our satin ballet costumes. I’ll never forget it because we were both much chubbier than the usual young ballerina, and I have this bandaged pad on my arm.

Another early memory is of a patch of rash on the back of my left hand. I must have been about 5 or 6, and this patch is how I came to distinguish my left hand from my right. The left hand had the rash. For years after that patch cleared up, I would hold up my hand to see the scar and confirm that this was my left hand. When the scar completely faded, I was in trouble. To this day, I sometimes confuse left and right! My husband always knows to ask twice if I’m giving him directions or to make me point the way.

From adolescence to adulthood

When I got into my teens, my psoriasis patches would come and go. As new types of drugs came out on the market, I used a succession of medications to tame the rash spots. My scalp was often scaly and itchy, and the white flakes it produced were embarrassing. I used a tar shampoo and a stiff rubber shampoo brush. The special shampoo left my hair looking dull and dry, so I tried a number of conditioners. My nails were occasionally pitted.

Every year, my family would take a trip to the coast of Maine in the summer. The sun and saltwater were considered good for healing psoriasis, and it seemed to help my skin.

One dermatologist told me that in Europe, people with psoriasis could get prescriptions to bathe in the Dead Sea. That wasn’t in the cards for me, but I was able to swim in the Dead Sea once in my early 20s. The water stung my skin, but it did seem to speed up clearing the rash.

Learning how to take care of my skin

I’ve tried a host of ointments to combat rash patches. Different dermatologists have recommended different approaches. One said to start with the mildest ointment and progress to stronger stuff if the rash didn’t clear. Another advised me to reach for the strongest ointment first so that the rash would clear up fast. Although the latter approach works better for me, I have to avoid using strong ointments on my face or on tender skin spots.

In general, I follow the advice I got many years ago: "lube, lube, lube." This helps keep the skin from drying out. I only take short, lukewarm showers so as not to dry out or irritate my skin, and I avoid swimming pools. I use fragrance-free detergents and dryer sheets, and I wear mostly cotton clothing to prevent irritation.

I can’t pinpoint any particular triggers for psoriasis outbreaks. Although wine makes me turn red, and hot weather makes me uncomfortable, they usually don’t cause a rash. My skin is sensitive in general, especially in the springtime, and I’ve always blushed easily.

My husband teases me because I travel with what he calls a "whole drug store." But I like to be prepared just in case a spot of psoriasis appears, so I can zap it with halobetasol or tacrolimus topical creams.

My skincare regimen

My routine involves a lot of products, some recommended by my dermatologist and others picked up as samples in the doctor’s office.

Skin

For many years, I’ve used a non-soap cleanser like Cetaphil. I also use the moisturizer CeraVe daily (twice a day in the winter!), and Palmer's cocoa butter for additional moisture.

When the weather is warm, I use Zeasorb antifungal powder. The powder helps prevent secondary infections. If the itching gets to be too overwhelming, I take warm baths in Aveeno’s colloidal oatmeal treatment.

Hair

Although I’ve tried prescription shampoos, T/Sal by Neutrogena is just as good at controlling the scaling on my scalp. If the scaling is thick, I use a prescription fluocinonide lotion. Sometimes I’ll use tea tree oil on my scalp to relieve dryness. I’ll also use an olive or coconut oil on my hair before shampooing.

Beauty

I never wore much makeup, and must confess that I never used any sunscreen until 2012, when I had a basal cell carcinoma removed from my face. Since then, I have tried a variety of sunscreens, but I'm still looking for a daily product that looks natural and isn’t greasy. If I’m going to the beach, I use La Roche-Posay’s Anthelios 50 at my dermatologist’s recommendation. Like most skin products, it’s not cheap.

Enter Lyme disease

Everything changed in 1997 when I got Lyme disease. It went untreated until 2009. My dermatologist said I had an erythema multiforme rash. Looking back, I believe this was a reaction to a tick bite and the beginning of my Lyme symptoms. At the time, I had no idea what Lyme was.

From that point on, I had a steady stream of skin ailments, probably all related to Lyme: large bruises at the slightest touch, rosacea, and a Baker’s cyst. I once had itch bumps all over my body that were even itchier than my psoriasis patches. The dermatologist called it PLEVA.

I was tested for Lyme in 2009, and after I began antibiotics, the bruises and the itch bumps quickly went away. By then I had a new kind of rash on my legs. It wasn’t itchy, but it wouldn’t go away. It wasn’t responsive to any of my usual ointments. This new rash was parapsoriasis, a precursor to skin lymphoma. This was scarier than expected, because both of my brothers had died young of cancer (leukemia in one and lymphoma in the other).

After a biopsy, the dermatologist sent me to an oncologist. The oncologist told me to continue on antibiotics and to use a special UVB lamp on my legs, gradually increasing the exposure time.

By 2011, the raised parapsoriasis rash had cleared up. It came back in 2012, a few months after I stopped antibiotics, and so I resumed the antibiotics and UVB treatment. Now, there are only blotches on the skin where the rash had been.

Taking it day-by-day

Today, at 73, I still have annoying psoriasis patches under my breasts, around my nipples, and in other skin folds. They are bothersome in the heat, especially, but on the scale of things, they’re bearable.

I have other skin ailments that are probably related to the psoriasis: blepharitis (inflamed eyelids and dry eyes), vitiligo (loss of skin pigment in spots on my limbs), and alopecia (hair loss). My skin is very thin, perhaps because of all the corticosteroids, and tears easily.

Still, I don't ever remember feeling burdened by the psoriasis. It has always just been an itchy nuisance. Perhaps having psoriasis has added to my general shyness. Looking back, I see that it taught me that people can accept you for who you are and what you do. It also made me more aware and more empathetic to others who are different because of a disability.

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